Crafting a creative, conscious existence of Love, Light and Blessings

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Multiple Sclerosis

My apologies, my dear Reader – for I have yet to break down each of yesterday’s pieces and share the metaphysical properties…

Today we went to downtown Galena, walked around and I went to the local bead store and spent the birthday money Gram sent… Gram is an amazing woman- still living alone at home at 94 and doing quite well (and receiving support services several times a week). It wasn’t much but perfect to get a few lovely beads to play with. (Note: I added the findings, the beads came naked)

Mother Of Pearl Pendants - 3 look like eyes but the bottom one has a small face

Agate Marbles that could become anything...

Titanium Quartz Pendants

As for not posting meanings as promised… we got home from a lovely day out (getting coffee together for the first time in years… literally), walked the dog and as we stood in the back yard, Dan turned and slipped on the snow/ice.
He has MS (with challenges with his balance) and has survived 4 major clots- 3 “massive” pulmonary embolisms since we got married 8 years ago (9 years in July) and will spend the rest of his life on blood thinners. Not a good combo.

And he fell on a 1/4 split chunk of wood too. We’re thinking sprained/cracked rib. So that’s taken all my attention. At this point, he’s in quite a bit of pain but alright. I will catch up in a day or two, promise.
Night all. Rest well…

OK… my level of frustration has reached a level where I must educate someone, somewhere, knowing that it may not make a difference in my life, but this may help another person suffering from chronic pain.

This is how I create a silver lining when all I can see are dark clouds.

Dan and I have MS. It manifests as extreme chronic pain. In order to maintain a manageable quality of life, we take pain medications.

There is one medication, used for decades for long lasting pain control. It has also been used to help addicts get off of heroin. For us, Methadone has been a life saver but it also has damned us to extreme discrimination.

Methadone works on specific receptors in the brain. These receptors are also subject to heroin. Think of keys and locks. The drug is the key, the brain cell is the lock. Methadone, when used for drug abuse, blocks the cell’s lock so that heroin cannot act upon the brain. When used for pain control, it unlocks the nerve cell and suppresses the pain signals, thus reducing pain.

We each have been prescribed low dose methadone (for pain control) for over a decade. We have never, ever, even tried heroin. Why are we being treated like drug abusers?

Our current problem is finding a doctor out here in rural Illinois that is willing to prescribe methadone for pain control. Even the “pain management specialists” are scared of it. But here’s the fucker- we have less than 2 weeks of medication left. It would be quite dangerous if we just stop the medication. The withdrawal would stress our bodies- stress we cannot afford.
Dan has survived 3 pulmonary embolism since we got married (a blessed miracle three times over) – it is this kind of stress that could generate another clot.

We have an appointment with one doc at the end of March. There is no way we can make it to then.

So everyone- please understand. Methadone is a well studied and widely used pain control medication. Don’t just assume that it’s for drug abuse.

Dan and I have MS (I’ve explained the general elements of it a bit already here . I think you’ll find I did a pretty decent job of distilling my 14 years of teaching other people about MS…)

Back to my furry, dusty, love filled “home” (and why it is like this)

Dan and I have lived together for about a decade (so far). We each have individually lived with “limited” energy (due to MS) for another 10 years on that… we have learned quite a bit. Thank God.

Metaphor time…

We’ll use a non human analog. You have a cell phone with an old battery. It takes longer to charge the thing and doesn’t hold a charge long.

You have a list of calls you need to make- a list far longer than your battery can possibly achieve. Doctors, bill collectors, your beloved friend, the vet, your mom…. which call would use that charge most effectively? Which calls are “mission critical”? What part of your life gets the energy?

I hate calling myself old- but in this case, I am very much like that old battery. At least my energy levels act like it.

So on my list- there are things I have to do ( find/visit doctors, feed/walk/care for the kids, obtain meds, obtain food, make coffee), things that feed my heart and soul (snuggle with our pack/pride, paint, create, write, take pictures, connect with Dear Ones, blog) and things that would be nice to accomplish (laundry, dishes, unpack boxes, organize, clean). There’s no way I could do it all. I am blessed to have Dan’s help, when he’s able, although level of help necessary can vary from day to day, hour to hour. His “battery” is quite sensitive to external circumstances- where in the month (in respect to his tsybri infusion) he may be, stress level, unforeseen events….

So I have to choose my energy expenditures carefully and remain flexible. Cleaning is at the far end of my list and is saved for days that have no other tasks that take priority.

Like today- weather’s crappy. No chance of heading down the driveway. And we promised Dave that we’d run a few loads of laundry and vacuum his main rug. Dan was going to do the vacuuming. I already did the laundry.

I am allergic to animal fur and dander. Vacuuming kicks it all up. Anti histamines knock me out. I have been known to shove tissues up my nose, just to slow the sneezing. Not pretty. Really.

Dan loves me and is happy when I’m happy. He thinks my sneezes are cute but prefers me awake. So he vacuums. Most of the time. But not today. Remember how I said the weather is crappy? Ice and water, bumpy and slick (AND wearing SLIPPERS!) All Together helped Dan test gravity. With his ass. (…it’s in the name…slip-pers…)

So I vacuumed with Dave’s ancient machine (sooo close to the end of its useable life) and noticed a straining of the motor (between sneezes).

It is a Dyson want-to-be with a canister collection bin. It looked a bit full. This is what I removed from said canister. Holding my breath.

Witty is this color. Pudders' underfur is the same

It worked far better afterwards. Still not well. Ugh.

In the end- The upstairs main rug and the back stairs were vacuumed. I’ve taken benedryl. I’ll be asleep within 15 minutes.

So if you do come over- make sure to comment on how lovely my home is, how warm it feels and complement me on how clean the stairs look. I’d rather have a love filled home, bursting at the seams with beauty and joy than a clean and tidy one. Any day.

Time to inspect Dan for any bad bruising and rest. My batteries are spent for now. Time to plug back in.

With Love, Light and Blessings- Peace be with us all..

fuzz

*maybe we should spend the day watching The Princess Bride? Btw- the book was written by the same guy who wrote the screenplay. So if you love the movie- you will love the book. Like a MLT but with more mutton…

365 days ago I had 70 degree weather outside. Light breeze, if I remember correctly. It was a perfect day for a lovely stop by the beach on my way home from work.
Kind of…not really.

I was at a point where every action i did was directly linked to my survival and still working full time. Wake up, work, inhale lunch, work more, drive home, cook a bag of something, sit on couch, try to work, fall asleep working and crawl into bed.
So the weather was beautiful but unreachable. I gave all I had for my 31 “kids “. It was worth it. I would do the same if I could today….

As I am blessed with challenges, there is a higher truth at play….

Yes. I am disabled and can no longer work. Yes, we didn’t choose to live with family but the Universe decided it was time to work on our humbleness. We are given this chance to re-vision our lives. Really being free to choose where our energy goes, without distractions.
It is beautiful here.
We got up, drank our coffee, took care of the animals, read and prayed, ate a bit, and did our work for the day – the calling of doctors and managing health stuff (on the necessary list). Then we walked down to the car to run it for a bit and stacked fire wood for today and tomorrow. I was able to do this today, without hurting myself…
Now I reflect, eat a bit more and allow my body the rest it demands. My daily “recharges” are mandatory. I have no choice- my body will claim sleep, regardless of my activity or posture. I will be asleep within 15 minutes. Desire has nothing to do with this.
So I make the process as pleasant as possible. Snuggling down with the animals and playing soft music help me find the warmth and peace I need to fully “plug in” and make the most of what I have.

In Part of my daily prayers I say:I am blessed with all I need to do what is mine to do. If I do not have the energy, it is not mine to do

*note- I am not a doctor but I do have a level of expertise on this subject. I was diagnosed with MS in 1998 and my husband was diagnosed in 2000. It’s how we met (a great story for another post). What we have looks very different but the underlying function and treatments are the same…this is just the beginning of this discussion- PLEASE ask questions Multiple Sclerosis (MS) is a catch all category for a type of immune system freak out. Our central nervous system runs on electricity. Wires have insulation to help with electrical transmission. Nerves have insulation too-called myelin. When insulation is damaged, circuits (and nerves) short out and may not work in the way expected.

Imagine if my cat chewed through the insulation on the wire going to a lamp. The light may or may not turn on. It may act in unexpected or unpredictable ways. With MS- it’s Russian roulette as to where the immune system decides to snack. Anywhere in the central nervous system (brain or spinal cord) is fair game. They don’t know what causes the disease in the first place (genetic precursors? Mono?) but there are a few key factors that may cause the immune system to make lunch of the nerves. Stress, overexertion, overheating and illness (a major immune system response) can cause an exacerbation- an active period of damage. Exacerbations are periods of greater symptom severity.

There’s no one test but neurologists usually rely on MRIs (looking for white spots that indicate scars) and spinal taps. The spinal tap (painful and, in my case inconclusive) look for proteins that are crumbs left over from the myelin lunch.

There are a few possible treatments- most of them are decoys for the immune system to attack..

So back to my (our) experience with MS… symptoms are many and vary greatly from person to person. For me- it started as burning numbness (think of a bad sunburn and wearing sandpaper shoes) on my feet and legs (I broke a toe and didn’t feel the scrape on my skin). My dis-ease progressed over time and then the pain got worse to the point of interfering with sleep (and then stopped me from walking) and then extreme fatigue joined the mix.
As for my husband- he first noticed a blind spot- his whole left field of vision went missing for a bit. MS likes to snack on the optic nerve (thank God that bundle of nerves can regenerate to a point). His balance “takes vacations” and his falls are dramatic. He also has more brain damage than I and can no longer be the ecosystem restoration engineer he once was.

Now, for me, 15 years later, some memory issues, painful stabbing, balance malfunctions and heat caused confusion has taken me out of the classroom. Or rather- I chose to leave teaching because I refuse to put my “at-risk” at further risk. And I can’t fight through the fatigue anymore.

What Dan and I have looks very different but there’s an understanding that is priceless. We have challenges to spare but we have love and faith in equal measure. We are starting a new chapter. One focused on first healing ourselves and then helping others to do the same.

Ask questions. This is just my experience. Everyone is different. I will help, if I can.
With Love, Light and Blessings-

I forgot how bleary eyed working on a computer makes me…and that used to be my 9-5 before watching the towers fall when living in NYC. I was a web application developer for DoubleClick in 2001(after 4 years of computer work) but my heart wanted to become a teacher. So, as I walked home to my apartment uptown, on that fateful day, seeing sky where buildings should be, I decided that my precious energy, already limited by Multiple Sclerosis, was better spent on teaching the poorest of the poor. So I went through the NYC fellowship and was dumped into a “high needs/hard to staff” school, in Bushwick Brooklyn. In the end, with a masters in education , I served for 9 years as a teacher in several Title I schools in NYC and south Florida. I love teaching. I miss teaching. But now my soul is guiding me upon another path and this blog is very much part of my re-creation, my re- vision of my place in this world. My body has decided that I gave all I could to my students and that there is a different way i am to serve. I may not know what I’m supposed to be doing but I hear the whispers of my soul, nudging me here. (Don’t ask me where “here”. I just know I’m in the right place) … Just like I keep getting nudged to change this piece…

FuzzBombCraft Flower of Light revised

May we all be blessed, with all we need, to do what is ours to do. With love and light. Namastè